fear | The Odd and Unmentionable

This image from Wikipedia is so great I had to use it again.

Well dear readers, I just read the bombshell. Last week, in The Death Panel Two-Step, I wrote about The New York Times revelation that, in a political style stealth-move, regulation approving Medicare reimbursement for doctors to discuss end-of-life care wishes with their patients was going to be included in the new health care reform policy after all.

When I first read the news I was happy about the policy, but dismayed and uneasy about the secrecy.

Now, my fears are confirmed. Barely a week later there’s been a complete turn around. The New York Times is now reporting that, since the news broke, minds have changed and the regulation was re-removed from the policy that went into effect on January 1. The suspected reason? The administration needs to reserve political capital for the bigger upcoming battle over the health care reform bill as a whole.

And so the dance around Advanced Care Planning Consultations continues. For those who may not have been watching closely, the steps so far have looked something like this:

Last year: The original legislation mandating reimbursement for doctors’ time is included as part of the overall health care reform bill. Result: The death panels outcry. The legislative language is subsequently removed from the bill.

Then last week: The story surfaces in the NYT that the bit about consultations has reappeared in the bill under the invisible cloak of regulatory language, and it will become law as of January 1. Inevitable result: The invisible cloak is ripped aside and the death panels outcry is renewed.

Today: The New York Times announces that the Obama administration has reversed course yet again. Result: Any doctor who takes the considerable time required to educate a patient about preparing for the dying process is going to have to pay for it out of his/her own pocket. That discussion will now only happen as an act of charity because Medicare won’t pay for it, nor will most insurance companies, nor will most patients (who can be reluctant to have that conversation in the first place, free or not.)

So for the time being it looks like politics will continue to dominate the debate about end-of-life care conversations. The Left and the Right will continue their wheeling and reeling around the dance floor, locked in an increasingly hostile embrace, both sides far more committed to fighting for the lead than actually listening to one another (or, far more importantly, trying to communicate effectively with us.)

I’m so saddened by this. I can’t help but think of all the suffering, frightened people this year who will be sliding backwards into the dying process, flailing and totally unprepared, with a very good chance they won’t even be able to turn to their doctor for adequate answers or guidance when it comes.

There’s a lot of blame for this mess flying around right now, and its all directed at the politics that came into play. But I think that’s all just smoke and mirrors. Blaming the politicians and holding them responsible for the quality of our dying is a most excellent way to avoid facing a deeper and far scarier truth; the majority of us are subconsciously grateful for the gridlock because now we still won’t have to talk about the fact that we’re going to die.

Most people are terrified to talk about dying in general and their own dying process in particular. Deep down, we don’t really want to have that conversation with our doctor to begin with. We don’t want to even think about, much less fill in, a living will. We don’t want to discuss with our spouse or children or friends what it’s going to be like as we die. And we certainly don’t want to look close enough at the gory details involved to make effective, useful plans.

The deeper reason this legislation didn’t pass is not because Democrats and Republicans couldn’t cooperate, but because most of us don’t want them to. Not on this one. Who in their right mind goes to the doctor to talk about dying anyway? Nobody? That’s the last thing we want to pay good money to hear. We can die for free. No. The reason we usually go to a doctor is to find out about all the new, better, and increasingly expensive ways there are to stay alive. And if one doctor can’t deliver a possible escape route then we’ll just keep on looking for another one who can.

Talking about dying in our culture is still a big taboo and it’s all about fear. Deep, irrational, primal fear lurking just below the surface, waiting to sabotage any and all attempts to deal with dying directly. It’s hard to imagine any good legislation being passed until this fear is both better understood and respectfully addressed.

With that in mind I thought I’d re-post something I wrote back in August about just this topic. The name of the post was Christmas Trees and Death Panels: How Fear Sets a Snare and (if I can figure out the technical details of how to do it) it should be coming up next.